partnering with non profits to advance pediatric brain tumor research

Lost in transition (post.5)

Updated: Mar 3

Where do you find yourself, and how do you find yourself after going through what we did in December 2016? After Cooper's 10 hour brain surgery we found ourselves in the first battle of many-with Posterior Fossa Syndrome (PFS). We now would call Spaulding Rehab our home for the unforeseeable future.

No one knows their coping skills or really understand what their body will do in survival mode until you really have no choice. I'm not sure you would even call my skills--My body just wanted to stop thinking and feeling and sleep was the only way to cope. I slept A LOT and still couldn't really get a grasp on getting through the day very easily. I couldn't find comfort in anything.

The moment I snapped out of it....I received a call from a family friend-someone who had gone through a very similar story 10+ years prior and her son was thriving. I remember holding onto every single word-trying to find any bit of HOPE . This all was my pinnacle moment of change. This 30 minute call set me into GO mode. In talking to this very educated mother-the trials she faced, the research she completed the overall attitude of being PART of the solution vs a victim--set me into motion. It was now a fight-- I would give my all, no more pity, just action, advocacy, research, learning, questioning...….just HOPE, strength and answers!

It didn't take my Nutrition degree to know the formula they were feeding to Cooper--AKA sugar water was not ideal for giving his body the nutrients needed to heal and fight. As I questioned their feeding choice it was clear they didn't hold the my same opinions and could not assist me in finding any alternates. The next few connections lead me into the healing path we continued down.

After connecting to an integrated nutritionist we were able to identify an alternative feeding formula called Liquid Hope or Nourish pediatric formula. This connection lead us to www.nutritional-solutions.net which would become a very empowering partner in our journey. They would help to maximize your cancer therapy with nourishing foods, nutrients and herbs to enhance the efficacy of your treatments, while safely reducing their side effects by EMPOWERING you with effective, evidence-based strategies, INSPIRE you to make changes that will nourish your health and GUIDE you on your healing journey." This just felt right, I found myself a bit less lost and starting creating a daily routine that gave me purpose & hope.